Tom2020: bad withdrawal from short-term lyrica microdose and don't know how much I'm taking

[Tom2020]

Current drugs:
- 2012-present citalopram, currently steady at 25mg
- 2020 lyrica: max 4mg/day. started tapering after 2 weeks and having worse withdrawal than from 225mg

 

This case history must be very unusal given the low dose and short time. Has anyone heard of a similar case? Also unusual is the bad method I'm stuck with to calculate doses.

 

Recent start and tapering of lyrica
-----------------------------------

I started a microdose of lyrica January 1 2020, thinking I could test side effects and stop if they were bad. Worked up to a maximum of about
4mg/day. After 2 weeks I decided it wasn't for mej. Reduced to 70% of max dose and held 4 days but got serious withdrawal symptoms. I thought an
increase might help so went up to 80% of my maximum for 2 days, symptoms got MUCH worse, then down to 75% (1 day) and 65%.

 

I thought lyrica and citalopram might be interacting and that tapering citalopram might be easier, so I tried 20% less (25->20mg) one day.
I got the worst anxiety of my life and haven't changed it again.

 

Following that I stayed on 65% of my lyrica dose for 2 weeks while I stabilised.

 

Now on day 5 down from 65% to 60% which has not been bad. So, tapering slowly seems best. BUT I cannot measure doses accurately because I'm
dividing powder with a knife on a plate (see below). Would switch to liquid but I can only guess how much I'm taking in a day.

 

I'd be grateful for any advice on what I should do! Or information about similar low-dose, short-term cases, or how to handle inaccurate doses.
I've been advised by some to go cold turkey given the small dose and short time, and that might have been ok when I started tapering after 2
weeks, but now I've been on it 6 weeks total. I could just about handle the initial 30% drop from my maximum dose but I could not handle
what happened when I raised it 10%, then lowered it again.

 

Maybe my case will be useful to someone. If nothing else it shows you can get hooked on a very small dose.

 

The rest of this post goes into background a little and a lot of detail about what I'm doing now, so may be of less general interest.

 

Prior drug history
------------------
- before 2010: prozac then paroxetine then seroquel. never any real trouble getting off them. Just some anxiety/irritability.
- 2012 lyrica (only) for 11 days max 225mg/day then tapered off over 5 days with bad withdrawal symptoms for about a week
- 2012 mirtazapine for a couple of months, after the lyrica
- 2012-present citalopram, starting near the end of the mirtazapine

 

Why is withdrawal worse in 2020 than on a much bigger dose in 2012?
-------------------------------------------------------------------

It's hard to compare the two but the current withdrawal seemed considerably worse even before I raised the dose again and made it much worse.

Some ideas I had:
- I'm also on citalopram now.
- Use or withdrawal from lyrica in 2012 primed/changed something.
- I got lucky when i went off quickly in 2012, just in time (tapering after 11 days of using it) and just fast enough (5 tapered doses)
  to escape worse withdrawal.
- The down/up dose in first week or withdrawal made it much worse. Also changing citalopram dose for 1 day seemed clearly VERY bad.

Switching to liquid
-------------------

Day 1 of last taper (65->60%) was partly with liquid I got from a compounding pharmacy. I replaced about 23% of the powder with liquid. Symptoms
from underdosing have been bad but less bad than raising the dose, so I aimed low, and took what should have been roughly 45% less liquid than
needed (using my rough estimate at equivalance - see dosing method below for details). It was much too strong. I got more sedated than I've ever
been on lyrica, lots of muscle twitches, then somewhat agitated when it wore off. I switched back to all-powder doses, and decreased the evening
dose by 1/3 to compensate for the morning overdose, and from the next day remained 5% of max dose lower. This has gone surprisingly well despite
the updose then decrease.

 

I'm tempted to stay on the powder, but I can't divide into smaller amounts than 1/256 of a capsule with any accuracy at all. That means as I
decrease the dose, the reduction step size will get bigger. The most recent step down (65->60%) was about 7.5% of my current dose, but that will
become 15% of current dose given a few more steps etc. Also, if a shirtsleeve brushes my reference doses away I'm sunk - I'll have little idea how
much to take.

 

But if I switch to liquid, I have to guess how much to take, and try to correct for symptoms, and gradually replace powder with liquid. After the
first drop in dose (100% to 70%) it seemed to take a few days for the withdrawal to really get going. If that's still true, adjusting the liquid
dose up and down could easily get out of hand and be less gentle than the later, and proportionally bigger, powder decreases. So neither option is
good.

 

Powder dosing method (details)
------------------------------

The method I use to dose is awful: I divide capsule's powder into two piles of 1/2, then divide each pile agqin and again.
Currently I take 1/64 + 1/128th of a capsule every morning and again at night. This has limited accuracy of course, but it gets worse;
there is residue left on the plate after the division. The amount of residue has changed over time since I switched from a big knife to
a razor blade, and I haven't been consistent about how much residue I leave.

 

At one point I thought measurements would be more consistent if I kept "reference" piles of each key size: 1/32, 1/64 and 1/128.
But I realise now the references are not accurate, and I'm basically eyeballing the new piles now to match the reference ones.

 

To estimate how much my 1/128 actually is, I started a new pill, and divided it with as little residue as possible (using a razor blade, which
doesn't leave much at allif you're careful). To my amazement I seem to have left about 50% of the pill as residue. Separately I began sweeping
residue from another pill into a pile, which I estimated was about 30% of the pill.

 

Another idea would be to weigh my 1/64th, but I suspect it's too little to measure accurately with any scale I can get my hands on.

 

Potency of my powder
--------------------

To make matters even worse, the capsules I'm using expired 4.5 years ago. From a short look on the net and talking with a pharmacist this
might not be big deal. But also the powder sits on a plate being slowly divided for up to 2 weeks before I take it, so it may degrade
somewhat.

[Gridley]

Welcome to SA, Tom2020.

 

I've brought your situation to the attention of the administrators and other moderators.

 

 

 

 

[brassmonkey]

We need to know a few things about the pills. 

What is the name of the medication?

The manufacturer?

Type of pill or capsule?

Strength as listed on the box?

Color of the pill?

Shape of the pill?

Any distinguishing marks on the pill?

 

With this we can hopefully identify exactly what pill it is and find out its manufactured weight. Once we know that we can roughly calculate what the dose is.

 

You mentioned weighing the 1/64th dose.  Do you have a scale available? If so could you weigh all the powder from a capsule or the whole pill if in tablet form and tell us that weight. Also what scale is it and what does the read out show? (0.001, 0.01).

[Tom2020]

Thanks very much brassmonkey!

>What is the name of the medication?
Lyrica/pregabalin

>The manufacturer?
Pfizer

>Type of pill or capsule?
Capsule of powder. "Hard capsule"

>Strength as listed on the box?
50mg

>Color of the pill?
White/beige plastic-like capsule with white powder in it

>Shape of the pill?
Like a length of pipe, but rounded at both ends.

>Any distinguishing marks on the pill?
Each says "Pfizer PGN 50". there's a black band around one end.

capsules Expired 7 2015

 

> With this we can hopefully identify exactly what pill it is and find out its manufactured weight. Once we know that we can roughly calculate
> what the dose is.

That would include the capsule body itself I guess, which would have be deducted somehow from the total weight.

 

>You mentioned weighing the 1/64th dose.  Do you have a scale available? If so could you weigh all the powder from a capsule or the whole pill if
>in tablet form and tell us that weight. Also what scale is it and what does the read out show? (0.001, 0.01).

 

I just bought a scale that I have not used.

Smart Weigh GEM20 High Precision Digital Milligram Scale 20 x 0.001g Reloading
https://www.amazon.ca/Smart-Weigh-GEM20-Precision-Milligram/dp/B00ESHDGOI/ref=sr_1_1_sspa?crid=18SLVVYZS1TZI&keywords=jewelers+scale&qid=1580415781&sprefix=jeweler's+scale

 

The first review goes into a lot of detail about accuracy and concludes:

> So when you combine all of the variences mentioned above, when not properly controlled, the same item might have a total variance of 0.005g,
> 0.028g, 0.016g, 0.001g for a total of +/-0.050g if everything happened to line up that way. (realistically, probably +/- 0.025g for the typical
> user). It is critical to control all of the above stated factors.

> How important is +/- 0.025g? If your object was 1.000g, this is +/-2.5%. But if you are trying to measure something that is 10mg (0.010g), this
> is a variation of +/-25%. The smaller the weight, the larger the % variation. I can understand why many reviewers are frustrated at trying to
> measure something as small as a few milligrams.

 

I figured 1/64 of the capsule's contents would be too small to measure with any accuracy but I could be wrong.

 

I really appreciate any help with this!

 

 

[brassmonkey]

Those scales are exactly the same as the Gemini-20 that we frequently recommend, just has a different name printed on it. Don't let the review throw you off they are a very good little scale and will work quite well for what we are doing. They do have some drawbacks but they can be worked with. These scales are pretty accurate down to 0.004g or 4mg which is a very tiny amount.

 

Now that you have the scales it will be easiest if you could weigh the contents of one of your capsules and tell us the result. Fold a small postit note or piece f paper in half, open it back up and then place it on the little dish. Turn on the scale wait a few seconds and then pour the powder onto the paper, wait a few seconds and record the readout. That's the number we need.

 

When we are measuring a dose we will be working with just the powder, so the weight of the empty capsule doesn't matter

 

All the stuff about the size, color and shape of the pill was so we could try and find it on line and determine the weight that way, but if you can do it directly, that's a lot better.  Because you are making up a dose of 1/64th of a capsule by eye that is what we will be calculating.  What you actually will be getting by weighing may be different from what you got by eye, but it will nail down a starting point and establish repeatability which is what we want.

[Tom2020]

Thanks very much Brassmonkey. I weighed a 50mg pregabalin capsule (including shell, just to get an idea) and got numbers from 0.238g to 0.253g with 0.243 being common. I kept the lid down for consistency (which helped a lot) and tried it with and without a 10g weight, which didn't seem to matter. I could try to get more accuracy, but so far this is what I'm thinking.
 

The errors are big: if the true value is say 0.250g then +/1 0.015g would be 6%. If I take the average reading the error is maybe 3%.

 

Let's say I remove the capsule shell and the powder itself totals say 0.225g then 3% would be 0.00675g.

 

I set aside approximately 1/64 of a capsule as a reference that I measure further doses against. If I measure that 1/64 that's about 0.225/64 = 0.003515g. That's half the size of the error estimate. You said "These scales are pretty accurate down to 0.004g or 4mg", which is a similar weight.

 

So unless I'm wrong, measuring 1/64 will be very inaccurate. I could easily measure double or half the true value, and hence take double or half the dose!

 

One idea is to eyeball two 1/64 piles and weigh them together (ie. 1/32), or even 4 together (1/16). But I'll make errors combining them, and I don't know if the end result will be any more accurate.

 

In fact, because of the huge amount of residue I leave on a plate, I think my 1/64 is actually about 1/128, so even harder to measure accurately.

I estimated that by comparing my reference 1/64 with a 1/64 I made leaving as little residue as possible. My 1/64 = a real 1/128 is my current estimate of what I'm actually taking. I'm doubtful weighing will improve on that, but I'd love to be wrong! What do you think?

 

Thanks very much again. It's a relief just to talk with someone about this. My doctor, pharmacists and family don't understand the issues at all.

[Tom2020]

Quick update: I weighed a little square of paper about 5 times and it read 0.036 or 0.037 each time. 30 minutes later I added 1/64th of a capsule to the paper and weighed it twice as 0.032 and twice as 0.033 - less than before I added the powder! The scale was in the same spot with the lid down each time I took a reading. Between readings the scale said 0.000. So the accuracy is nowhere near good enough to weigh 1/64 (which I think is really about 1/128 and so about 2mg since the whole capsule is about 0.250g).

 

[brassmonkey]

Okay, I see your point.  But the numbers do show one very important thing.  You are in the endgame area of this taper which means that you would be having trouble making up the doses anyway because they are so small.  People frequently end up visually dividing their doses at this point because it is the most accurate way to do it.

 

If you calculate 1/64 of the pill weight you get 250/64 = 3.9mgpw for your dose weight.

 

If you calculate the AIC (Active Ingredient Concentration) by dividing the pill strength by the pill weight you get: 50/250 = .2  This means that for every 1mgpw you get 0.2mgai.  Multiply this by the dose weight of a rounded 4mgpw and you get a dose strength of 0.8mgai.

 

During endgame tapering it is quite common to make 50% reductions.  This is purely because it is so difficult to handle the small amounts of powder, as you know. Two more 50% reductions will give you a dose of 0.2mgai.  This is a good place to make the jump to "0". I think your best bet is to continue to visually divide your dose as best as you can for two more reductions and then make the jump.

 

Save the scales for doing your taper for the citalopram, they will work well for most of the taper.

[Tom2020]

I can see two ways forward:

 

1. Switch from powder to liquid. It will be much faster to measure and probably more accurate. I can taper more accurately than with powder. I won't have to worry about losing the powder reference dose (which is vulnerable as it's juts a tiny pile of powder on a plate - I've scattered other piles by accident more than once). The big problem is I don't know the equivalent amount of liquid and big changes in dose cause VERY bad reactions. Not just discomfort but quite possibly permanent injury, especially give my other health problems.

 

2. Continue with my unknown powder dose, and taper it gradually by eye. But it could go catastrophically wrong if I lose the reference dose, and it might take months to get off completely. Minor issues: I could do tiny tapers, but would probably go up and down a bit in dose which won't help. And morning and evening doses may not be quite the same.

 

So everything is is favor of switching to liquid, except for one VERY big negative: I don't know how much to take.

 

If I do swithc to liquid, I think I should continue my first experiment, where I replaced only part of a morning's dose. That way I can guestimate how much liquid to take. If I take too much (like last time) I take less the next time. Once I get a rough eqivalence I can replace more of the powder with liquid and eventually be entirely on liquid.

 

One more complication is my powder expired 4.5 years ago, and what I'm taking has been sitting on a plate for up to 3 weeks and may have lost strength. I have liquid from a pharmacy but that may be stronger. And maybe not just stronger, but different, if some effect of the lyrica degrades over time and some doesn't. Which do I use? Any information on how stable the powder is would be very useful!

 

[Tom2020]

Thanks Brassmonkey. I made my last post before I saw yours. Your point about the endgame is very important.

 

I am at a very low dose now, but I was only on about 4mg/day max. I really hope this is the end game, but I'm not sure. I'm still on 60% of my max dose (4mg), or probably less as there's more residue now and I think my reference dose is smaller than the original divisions I was making. So maybe 40 or 50% of my max.

 

On one hand, my last taper of 5% (of max / 8.5% of current) wasn't bad. But the first taper, of 30%, was REALLY bad. I then made it much worse by going up 10%, down again, and (for one day) 20% less citalopram, all within a few days. I nearly ended up in hospital. I'll avoid repeating that, but even 30% was really bad, so 50% doesn't sound good at this point! I guess the only alternative is a smaller taper and to see how that goes.

 

I've heard the final tapers are usually harder, because they're a bigger percentage change from current dose. Is that right? And the jump to 0 is the worst. I didn't know 50% cuts were common (but I don't know much - this is all new to me).

[Tom2020]

When dividing up my lyrica powder I sometimes see tiny transparent crystals, but otherwise it's 99% white powder. Do anyone know what the crystals are? I ask because along with all the other misguided things I've done, I've been throwing out the bigger ones when I see them. This just makes it even harder to know what dose I'm taking, and a switch to liquid would be even more of a change since liquid would include the crystals.

Edited February 14, 2020 by Tom2020
More details added

[brassmonkey]

If you want to be very precise with the reductions then liquid is the way to go.  Once you know the concentration of the original liquid you can calculate any dilution you want so you can take a large volume dose and still get a very small amount of active ingredient.  We've already determined that  you are taking about 0.8mgai  for each dose, so it is relatively easy to calculate how much of the liquid to take, once we know it's concentration.

 

Because you would be going from a guesstimated dose to a specific dose there is a good possibility that there will be some upset with the transition.  Also changing from pill to liquid has been know to cause problems.  So it might not be a smooth change over. But once you are there and stable you will have very finite control over your dose strength.

 

Many manufacturers use dextrose as a filler, so it is more that likely that the crystals are just sugar. Depending on their size and number removing them could cause problems with the AIC for the batch you are working with. That would throw off your dose strength.

[Tom2020]

Thanks very much Brassmonkey. Liquid would be better but the transition seems dangerous. On the other hand my last 2 doses of powder were too strong so powder's not great and may be getting less accurate as I switch between piles of powder that have been sitting out for different lengths of time and maybe degrading over 1-3 weeks. Neither is a good option and I guess there's no way to know which is better.

[Tom2020]

The more I read about tapering the more it seems important to keep your dose as stable as possible. So now I'm thinking instead of switching to liquid from a pharmacy (which could be a generic version of lyrica) I should make my own from my expired pfizer capsules, and maybe expose the powder to air for a couple of weeks before making liquid from them, since the powder currently sits on a plate for a couple of weeks slowly being divided before I take it.

 

Unfortunately I have a limited supply of what I'm taking as powder: about 22 x 50mg capsules that expired 07/2015. The next closest I have in terms of expiry date are 30 x 75mg capsules that expired 10/2013. I've heard the self life of home-made liquid is 5 days so if each capsules lasts 5 days that's about 3.5 months and 5 months respectively. That's not enough for long holds and many tapers, but I might not need many given the low dose. Also I could probably stretch them out by eg freezing half the liquid from a capsule until I'm ready to use it, or using half the contents of a capsule for each batch of liquid. (I'd have to somehow divide the contents in half by weighing, which sounds tricky with powder.)

 

This is a lot more hassle and more error-prone than using pharmacy liquid but maybe worth it for consistency with what I'm taking now. All thoughts on this are appreciated!

[Tom2020]

Thinking about consistency of dose again: what's the best way to switch from powder to liquid?

 

I experimented for one day a couple of weeks ago with a split powder/liquid dose: I replaced 42% of my morning dose with liquid from a pharmacy. I estimated the equivalent in liquid, and reduced it by 30% because I'd rather go down 30% than up 10% (from previous experience yo-yoing). I made a math mistake and actually reduced it about 54% but I got far more sedated that I've ever been on pregabalin, so the liquid part of my dose was too strong (or maybe just different since my powder has expired and sits out). So I switched back to entirely powder doses, and took 1/3 less powder in the evening to compensate, and took it 3 hours late, and cut 7.6% of my current dose permanently starting the next day. I'm amazed that didn't go really badly given all the instability. (In contrast, my only other cut was 30% and that was very bad, and even worse when I went up 10% then down again.)

 

So what's the best way to switch?

 

1. Replace all the powder with liquid and stick to the same liquid dose no matter what happens? That's only 1 change, but it might be a big one, and updosing only 10% (after a 30% drop) nearly broke me the first time it happened.

 

2. Replace only part of the morning powder with liquid, and try to adjust the amount each day, until they seem roughly equal, then switch to all liquid. That means smaller changes, but more of them. And if each one takes about 4 days to fully register that could get very messy.

 

3. As 2, but only test the liquid for one day, then stabilise back on all-powder doses for a while. Then repeat. That seems most stable, except my powder doses seem to be getting less stable, because I'm running low on the current pill and using residue from my earlier divisions, which somehow seems too strong. Or maybe the line of powder I use as a reference changed a bit. (It disperses a bit on the plate and I have to reshape it, and some sticks to the razor blade...)

 

OR maybe instead of switching to liquid I should try a 20% cut of the powder, the smallest I can make while keeping the morning and evening doses the same. If that goes well maybe I can taper all the way off without liquid, although each cut will be a bigger % of my current dose. As I mentioned, the last cut (7.6% of current) somehow went well despite the instability. But my initial 30% cut was a nightmare. So I'm not optimistic.

 

OR stick with powder and mircotaper entirely by eye. I think I've been doing this a bit without realising it for a couple of weeks. Very unprincipled but the only way to avoid big changes. It has gone OK lately and much better than a big dose change. It seems reckless but I can't think of a better way!

 

 

 

[Tom2020]

Titled:  Critical decision on how to change dose method/updosing fear

 

What's the best way for me to minimise dose change and injury? I feel like I'm running out of runway very quickly...

 

I'm dosing lyrica from powder by eye so I have only a rough idea how much I'm taking. I never took more than about 0.9mg of active ingredient a day, and now I'm on about half that. I've been on it for about 6 weeks total.

 

I wanted to switch to liquid to get control over the dose amounts but since I don't know my dose, changing to liquid will be a big dose change. I could easily go up or down by 100% (or more) of my current dose.

 

I don't know if I could survive that given my health problems. My first taper gave me serious hypomania/suicidal thinking and ripped open a fissure I've had for months. It was a 30% cut initially (4 days) and was really bad, but when I went up 10% for 2 days it was much worse. So I'm very afraid of updosing.

 

Is updosing always that bad or did the initial drop make it worse?

 

If I switch to liquid should I just guess a dose and stick with it no matter what? Or try to adjust it for a few days based on symptoms? Or use both powder and liquid for a few days while I try to calibrate the liquid dose?

 

Or should I stick with powder and micro taper by eye? This seems the only way to avoid a big change, but it's the least principled way to control dose. I do have a system for dividing powder by eye into tiny amounts (1/2 capsule -> two 1/4s -> four 1/8s ...) but it means abandoning even that and permanently going up and down a little twice a day and hopefully down on average.

 

Or stick with powder and and my division system and try to make fewer but bigger cuts? The smallest I can make is 20% of current because I can't divide the powder any smaller with any accuracy, and later ones will get bigger. And my 30% cut was awful, so this seems unworkable.

 

I really don't know what to do and I think this may end very badly.

Edited February 18, 2020 by manymoretodays
added title, merged to introduction from tapering

[Tom2020]

On 2/13/2020 at 12:39 PM, brassmonkey said:

You are in the endgame area of this taper which means that you would be having trouble making up the doses anyway because they are so small.  People frequently end up visually dividing their doses at this point because it is the most accurate way to do it.

 

Two more 50% reductions will give you a dose of 0.2mgai.  This is a good place to make the jump to "0". ..

 

 

Brassmonkey: when you say visually dividing doses, were you thinking of water titration or something else?

 

Bad news about my dose: I realise the earlier discussion of active ingredients was wrong because I've been calculating based on AI not actual weight.

My current dose is nominally: 1/64 + 1/128 (morning) + 1/64 + 1/128 (night)  of a capsule = 0.046875 in decimal (or 4.6875% of a capsule).

Multiplying the 50mg of Active Ingredient per capsule by that fraction gives 2.34375mgAI.

 

So sadly I'm not as far into the endgame as I'd hoped. However, I think roughly 50% of my powder is actually left as residue on the plate. So I might be taking 1.1718mgAI, which is better but still more than 1mg.

 

[Altostrata]

What's your estimate of how much of a capsule you've been taking?

 

If I were you, I would convert that estimate into a liquid dose, and take that consistently for at least a week to see how if it's enough. It's quite easy to make a liquid from Lyrica.

 

Please let us know how you're doing.

[Tom2020]

Thanks for checking on me. I really appreciate it. You do an amazing job here.

 

My best guess is I've been taking very roughly 2.45% of a 50mg capsule that expired 4.5 years ago, and the powder has been sitting on a plate for 2-3 weeks by the time I take it.

 

Water titration would be a huge improvement but I could easily take 2 or 3 times too much or too little and that's terrifying given how bad a 30% cut was. So I'm wondering if I should carry on with the powder even with the limited accuracy. I know there's probably no good answer.

 

Is updosing/reinstating an earlier dose normally traumatic? I cut 30% for 5 days and that was very bad but then going up 10% made it much worse. Thanks.

 

 

 

[Altostrata]

How are you now, @Tom2020? Att @brassmonkey

[Tom2020]

2 hours ago, Altostrata said:

How are you now, @Tom2020? Att @brassmonkey

I'm near the very end of tapering powder by eye and will probably jump to 0 in a few days. A new issue is some doses taste very bitter and others have little or no taste at all  - at the small amounts I'm taking maybe the medicine is not evenly distributed in the filler? If so, prolonging the tapering may not be helping. Thanks for checking on me.

[Altostrata]

Do you have withdrawal symptoms? If so, I would stop tapering.

 

I doubt the taste test is significant.

[Tom2020]

Symptoms are not as bad now as they were at higher doses but I still have some, mainly diarrhea and twitching. Not consitent from day to day. Maybe I passed some kind of threshold. I think I'm taking between about 0.25mg to 0.75mg active ingredient today. I've been making tiny reductions every day.

25 minutes ago, Altostrata said:

Do you have withdrawal symptoms? If so, I would stop tapering.

I could understand stopping if i had no more symptoms, but why stop if I do have them? Thanks.

[Altostrata]

Because if you get withdrawal symptoms while you're tapering, they're going to get worse as you lower the dosage.

 

If your symptoms are an adverse reaction to the drug, your symptoms will get better as you lower the dosage. You decide.

 

I think we explained all of this to you before, as well as the need for more measured tapering. I hope it all goes well as you pursue your own method.

[Tom2020]

1 hour ago, Tom2020 said:

1 hour ago, Altostrata said:

Do you have withdrawal symptoms? If so, I would stop tapering.

 

Ah, I thought you meant if i had withdrawal symptoms I should jump to zero, but you mean hold where I am.

 

Hopefully I'll be at 0 in a few days. I'll update this thread in case it's ever of use to anyone. Thanks again.

[Altostrata]

Yes, please tell us how you're doing.

[Tom2020]

Quick update: I took my last dose of pregabalin about 2 weeks ago and it has gone well. I tapered powder by eye until I could hardly see the doses.

 

I did an awful lot of things the wrong way. To summarise my tapering briefly there were 3 phases:

 

1. Horrible withdrawal symptoms. I started by cutting my dose 30% overnight, stuck with that 4 days then increased 10% for 2 days, then dropped 10% again. Obviously big drops and going up and down are not good. But also I was taking more at night than in the morning. That was OK before I started tapering but once in withdrawal I suspect it made things worse. I was also not taking it at consistent times eg. one day it was 40% in the morning, 60% at night, another it was 20% morning, 20% afternoon, 60% at night. Also the time of the doses was not consistent - the morning dose might be 11am one day and noon the next. Finally, I tried cutting my citalopram dose a little one day, which went very badly.

 

2. Bad but nowhere near as bad. After phase 1 I stabilised for a month on the same dose, same times of day and same amount morning and night. Made a small cut and it went much better. Made another a couple of weeks later and again it wasn't anywhere near phase 1.

 

3. Microtapering. I found I could make small reductions every couple of days, and eventually every day or every dose and it caused few symptoms.

 

In phase 1 I was making it up myself, but phase 2 had the benefit of good advice including from this site. It made all the difference. THANK YOU!

 

One big issue in phase 2 was whether to jump from powder with an unknown dose to liquid with a known dose. The problem was I didn't know how much liquid to take, since I could not measure the powder (it was too little to weigh). In the end I stuck with eyeballing the powder becaues I thought the change in dose would be too big a shock and I really didn't want to updose. I'm lucky it went as well as it did.

 

If anyone finds themselves stuck on powder doses they can't measure accurately i'll be happy to help if I can.

 

 

[Altostrata]

You're welcome. Good to hear things are going well. You are welcome to help us advise people who are tapering with powders. (Most listen to us and get digital scales or make liquids, but coaching to go slow is always valuable.) 🙂

[Tom2020]

A psychiatrist told me many drugs do have tolerance and WD effects, but not nearly as much on occasional use.

 

What's known about that? It seems like an issue of general interest - is there a better place for this post?

 

She suggested using seroquel as needed up to 3 or 4 times/week as a sedative when I feel too wired to function. The smallest pill is 25mg and she recommended 1/2 or 1/4 of that. Thanks in advance.

 

[Altostrata]

@Tom2020, how are you doing?

[Tom2020]

This is a new intro post because my old one deals only with my pregabalin withdrawal in 2020.

 

Overview

• On and off various antidepressants since 1995.
• On for about 13 years total, mostly because I thought it helped with ME/CFS (Chronic Fatigue Syndrome)
• I realised only in 2020 the ME flare-ups I had when trying to stop antidepressants were actually post-acute withdrawal syndrome (PAWS). (Both ME and PAWS can feature a wide range of ever-changing autonomic problems.)
• I got some very bad advice: keep trying drugs until one works. Never given any guidance on how to taper off.
• I remember no symptoms from my first withdrawal (prozac) but later ones got worse and worse.
• In hindsight I never needed antidepressants. Following the triple diagnosis / biopsychosocial model, I needed to change my thinking and my career, instead of trying to compensate for them by tampering with my brain.

 

Short history

• ME/CFS (in hindsight and/or PAWS) started by 1996 or 1997. Mild at first and undiagnosed till 2007.
• 2007: prescribed quetiapine for sleep, which was unnecessary, didn't work, and, as I learned much later, not an appropriate use for it. The withdrawal was difficult and for months after stopping I was in a state of over-arousal, unable to relax and easily startled. An infection a month or two after I stopped triggered much, much worse ME, which was finally diagnosed. The sustained arousal model of ME [1] suggests it results from chronic overarousal, which my quetiapine withdrawal certainly caused.
• 2016: retired early due to ME. Reduced citalopram dose, which caused serious PAWS for a year.
• 2018: another withdrawal triggered permanent food sensitivite and 4 months of restlessness.
• 2019: tapered completely off citalopram, much too fast. Major ME/PAWS and various other health problems started, including depression. Eventually reinstated citalopram. Have been largely bedbound and housebound ever since with various problems.
• 2020 January: in a crisis I added a low dose of pregabalin/lyrica to the citalopram. Started tapering off after 2 weeks due to side effects, suffered extreme withdrawal. Found Surviving Antidepressants and finally learned how to withdraw safely. I stabilised the dose, then tapered off over 2 months. This was still too fast but for complex reasons I was eyeballing my dose and going much faster than ideal.
• 2020 April: two vaccines trigged an ME/PAWS flare-up. Two weeks later, a long video call with friends and an online game triggered 6+ months of extreme sensitivity to mental or physical stimulation. Sometimes reading the news or writing emails was enough to overwhelm my nervous system and all I could do was meditate for up to an hour to calm it.
• 2020 July: Psychiatrist advised gradually increasing my citalopram dose to the maximum and then possibly adding low-dose quetiapine as needed but not more than 3 or 4 times a week. I did neither.
• 2020 Nov-Dec: stopping topical diltiazem/cardizem (a calcium channel blocker, like pregabalin) caused worse symptoms for a couple of months. After that I started to recover significantly from the hypersensitivity to stimulation.

 

[1] Can sustained arousal explain the Chronic Fatigue Syndrome?
Vegard B Wyller, Hege R Eriksen & Kirsti Malterud
Behavioral and Brain Functions volume 5, Article number: 10 (2009)
https://behavioralandbrainfunctions.biomedcentral.com/articles/10.1186/1744-9081-5-10

 

[Tom2020]

Current issues (August 2021)

• Drug intolerance: Hypersensitive to diltiazem and topical steroids. But NSAIDs, melatonin and valerian are OK.
• Food intolerance. I'm on an extremely limited diet. Excluding all FODMAPs, which trigger ME/PAWS. 5 cubic millimeters of chocolate spaced me out for hours in 2020, but now I seem much less sensitive to it.
• Vitamin intolerance: a multivitamin puts me on edge. Yet to work out which vitamin(s) are responsible.
• Immune overreaction: a seemingly minor infection in April 2021 triggered a serious ME flare-up
• After blood samples were taken in March 2021 I nearly threw up and passed out. That's never happened before.
• I already have the problems above AND I'm still on my highest-ever high dose of citalopram (27.5mg/day), unchanged since July 2020. I'll slowly taper off citalopram at some point but I have other health issues to deal with first.
• I'm not depressed at all and the extreme sensitivity to physical or mental stimulation is much better than a year ago.
• Covid vaccine: I've been holding off due to the sensitivities above, especially the extreme sensitivity following vaccination in 2020.

 

[getofflex]

Previous post moved to your intro topic to keep your history all in one place.  Please post questions and discussion about your situation in this one thread, to avoid confusion and duplication of efforts.  Thank you.  

[Altostrata]

Your sensitivities should gradually fade, if nothing occurs to renew them.

 

Please let us know when you're ready to taper.

[traz23]

@Tom2020 : you mentioned you stopped pregabalin some time ago due to side-effects. Would you mind sharing what were the most bothorsome side-effects?

[Tom2020]

1 hour ago, traz23 said:

@Tom2020 : you mentioned you stopped pregabalin some time ago due to side-effects. Would you mind sharing what were the most bothorsome side-effects?

I stopped in 2020 due to side effects but also concerns about withdrawal, due to my 2012 WD experience and from pregabalin WD reading I was doing in 2020. The side effects before I started tapering were:

- constipation and diarrhea
- muscle tension, trouble urinating as a result
- agitation, stress, low mood, restlessness
- flu-like discomfort
- sleeping badly

But I was only on it for 14 days and side effects often clear up eventually. Also I had the mood issues (except restlessness) before starting so it's not clear to me how much worse pregabalin made them.